Dataset Information

Communication Support Needs in Adults with Intellectual Disabilities and Its Relation to Quality of Life.

ABSTRACT: Research suggests that individuals with intellectual disabilities (ID) experience difficulties in communication, ranging from intelligibility issues to more severe problems in the use and comprehension of spoken, written or sign language. Despite the negative effects that the inability to communicate have on quality of life (QoL), not much research has explored the relationship between communicative competence and QoL in the adult population with ID. The aim of this study was to describe the global communication profile of a sample of 281 adults with ID recruited from Grupo AMÁS Social Foundation, who differed in their level of communication support needs (CSN). The relationships between communicative competence and CSN with QoL were further examined. The results showed lower QoL indices for those participants characterized by their limited use of discourse and inability to exhibit certain communicative purposes, with the largest differences in the dimensions of self-determination, social inclusion, interpersonal relationships, emotional wellbeing and personal development. Overall, low levels of QoL were found for all participants, with even lower scores for the group identified as having CSN. A multiple regression model revealed that having speech/discourse competence is a powerful predictor of QoL, along with the level of disability and having the communicative competences to express likes and preferences or to establish new relationships. This clear relationship between communication and QoL is an important argument for disability support services when it comes to setting communication supports as a priority and as an important preventive step towards the protection of those at risk of exclusion.

SUBMITTER: Garcia JC

PROVIDER: S-EPMC7601275 | biostudies-literature | 2020 Oct

REPOSITORIES: biostudies-literature

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Communication Support Needs in Adults with Intellectual Disabilities and Its Relation to Quality of Life.

García Juan Carlos JC Díez Emiliano E Wojcik Dominika Z DZ Santamaría Mónica M

International journal of environmental research and public health 20201009 20

Research suggests that individuals with intellectual disabilities (ID) experience difficulties in communication, ranging from intelligibility issues to more severe problems in the use and comprehension of spoken, written or sign language. Despite the negative effects that the inability to communicate have on quality of life (QoL), not much research has explored the relationship between communicative competence and QoL in the adult population with ID. The aim of this study was to describe the glo ...[more]

PMID: 33050216

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Project description:Individuals with disabilities are regarded as a highly vulnerable population group, particularly as far as oral health is concern. However, few studies have assessed the impact of the oral condition on the quality of life of these individuals. Therefore, the aim of this study is to expand knowledge on the oral health status of the Portuguese adults with mild intellectual disability, and to assess how the patient's oral health is related to their quality of life. A sample of 240 adults with mild intellectual disabilities linked to the Portuguese Federation for Intellectual Disability, were interviewed using a previously validated version of the Oral Health Impact Profile. An oral health examination was also conducted using three oral health indexes: Clinical Oral Health Index (COHI); Clinical Oral Care Needs Index (COCNI) and the Clinical Oral Prevention Index (COPI). Sociodemographic characteristics and dental health factors were also collected, following statistical analysis. More than half of the individuals (54,9%) presented one or more problems of major to severe impact on health (COHI level 2); only 4,6% of the individuals do not need treatment or examination (COCNI level 0) and 85% of the study sample needs measures of educational or preventive action (COPI level 1). In 76,9% of the participants, oral health had impact on the quality of life. The most affected dimensions of life were physical pain with 61,9%, followed by psychological discomfort and psychological disability with 45,1% and 45%, respectively. With relation to oral health factors and sociodemographic variables it was verified that fewer teeth and higher self-perception of need for dental treatment had a negative impact on the quality of life. On the other hand, institutionalization and an increase in at least one category in the self-perception of the oral health status had a positive impact on the quality of life. Given the high burden of oral disease and the considerable impact on quality of life found in this study, the establishment of guidelines to improve the oral health and quality of life of these individuals should be regarded as imperative.

Project description:BackgroundAmong adults with intellectual disabilities (ID), problems with eating, drinking and swallowing (EDS), and an associated need for mealtime support, are common, with an estimated 15% of adults known to specialist ID services requiring mealtime support. We set out to identify which adults with ID who receive mealtime support are at an increased risk of respiratory infections and emergency hospitalisation related to EDS problems.MethodAn exploratory, prospective cohort study was undertaken in the East of England. At baseline, structured interviews with the caregivers of 142 adults with ID and any type of mealtime support needs were used to gather information on health and support needs over the previous 12 months. These interviews were repeated at follow-up, 12 months later. The resulting dataset, covering a 24-month period, was analysed with logistic regression, using model averaging to perform sensitivity analysis, and backwards step-wise variable selection to identify the most important predictors.ResultsIndividuals with a history of respiratory infections (in the first year of study), those who had epilepsy and those with caregiver-reported difficulty swallowing were most likely to have respiratory infections in the second year. Adults with increasing mealtime support needs, epilepsy and/or full mealtime support needs (fed mainly or entirely by a caregiver or enterally) were at increased risk of emergency hospitalisation for EDS-related problems.ConclusionsOur findings highlight the importance of carefully monitoring health issues experienced by adults with ID and EDS problems, as well as their eating, drinking and swallowing skills. However, the models developed in this exploratory research require validation through future studies addressing the EDS problems commonly experienced by adults with ID and their implications for health outcomes and quality of life. Further research into the relationship between epilepsy and EDS problems would provide much-needed insight into the complex relationship between the two areas.

Project description:BackgroundPeople with intellectual disabilities (IDs) face significant communication barriers when accessing health care services; they find it difficult to identify and describe conditions clearly enough to support practitioners in making an accurate diagnosis. In addition, medical professionals generally have little knowledge and understanding of the needs of people with ID, which may result in the use of consultation techniques that do not cater to their patients' skills.ObjectiveThis review aims to identify and synthesize the literature on alternative and augmentative communication technologies that are used to support adults with mild ID during the exchange of information with medical practitioners.MethodsWe performed a scoping review of studies published in English that describe the technologies that are used to promote communication with patients with mild ID during medical consultations. The databases searched were PubMed, ACM Digital Library, and Google Scholar. A qualitative framework-based approach was used to synthesize the data and discern key recurring themes across the identified literature.ResultsOf the 1557 articles screened, 15 (0.96%) met our inclusion criteria. The bulk of the communication aids used focused on low-tech solutions, including patient passports, note-based prompts, Talking Mats, health diaries, and easy-read information sheets. Their influence on current practice ranged from advancing medical professionals' knowledge of the health and communication needs of people with ID to increasing interagency collaboration, patient advocacy skills, and health promotion activities. The major barriers to the implementation of low-tech aids were a lack of portability and increased maintenance efforts. Only 3 studies explored the use of mobile apps to promote communication. Their findings indicated that high-tech solutions offer greater customization with regard to the accessibility and health care needs of people with ID.ConclusionsAlternative and augmentative communication technologies have the potential to increase the quality of care provided to patients with mild ID; however, little work has been carried out in this area. Greater emphasis must be placed on (high-tech) two-way communication aids that empower patients to become involved in decisions regarding their care. Quantitative evaluation methods should be used to discern the true benefits of such aids, and researchers should describe their study protocols in depth to promote replication and generalizability.

Dataset Information

Communication Support Needs in Adults with Intellectual Disabilities and Its Relation to Quality of Life.

Publications

Communication Support Needs in Adults with Intellectual Disabilities and Its Relation to Quality of Life.

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